Thursday, October 5, 2017

Prepare yourselves for a long post! Honestly, I'm not sure how to organize this...here goes.

Elena started seventh grade this year. Fall is always a difficult time; there's the end-of-the-summer blues, the excitement of a new school year, the change in schedule, and the constant issue of time management--those issues are typical. On top of this, Elena has a slew of others: worsening crouch (happens every fall), time crunch, increased responsibilities (see time crunch), struggling independence (wants it, but has issues carrying, keeping up, etc.). I am trying to navigate technical resources (online school curriculum, social media for tweens, assistive technology), and give the right assistance when needed, teach her to be responsible, and give Elena the fun time she wants and deserves. It's challenging, to put it mildly.

Social/Fun time/Time Management
I let all Elena's educators know that social interaction was going to be a huge focus this year. I want her to enjoy her school, extra-curricular activities, and spending time with her classmates. Unfortunately, as a parent, it can be difficult to know what is available for kids around school groups--they are typically not posted online, or sent home as paper flyers. Normally they are advertised on school grounds or during the school announcements--this means I have to depend on Elena to not only pay attention, but also relay the message to me on time about what she is interested in doing. Sounds easy, but it never happened last year, in part, b/c of her leaving early to get to her next class or for school dismissal. We stressed at home for E to pay attention this year to what was being offered. She did, and wanted to do everything--a girl after my own heart. So we had to make a few choices.

Elena was in the Honor Choir last year and loved it. This year, she auditioned again for the elite choir (Honor Choir is a different group)--and she made the cut. They practice 3x/week before school, as well as performances out of school. It's a huge commitment, and has other difficulties (standing for long periods, dress uniform), but the director and I are in good communication and we're making it work. She has to keep up her grades and conduct in order to stay in the elite choir.

She also wanted to join two other groups--a gaming group (Tuesdays before school) and the radio/announcement (audio/visual) group. We asked her to pick one, and she chose the gaming group.

After school she has PT 1x/week, and she has Psych services about once every two weeks. We are looking to phase out psych, but honestly, I'm not sure if we are ready for that. We are still expected to do stretches every night, and the best way to help with her crouch is her TherEx regimen (takes about 20min/day), and we are failing miserably at fitting these in, and she's also supposed to be working on being more helpful around the house (but honestly there is no time for her to help with dinner, or learn to do her own laundry, etc.).

So. How to fit all this in with homework--that's the question, right?

She typically has a math worksheet daily (she was placed in an Advanced Math class this year, and it's tough for her), and two long-term projects (one for Language Arts and one for Science) that require planning and daily reading or writing. It's crucial that Elena not wait until the last minute; she cannot "hurry up" and she reaches an hour of the evening (earlier than her peers, I imagine) where she is no longer productive. She also has up to 9 online math modules to finish per week. She *has* to shower in the evenings, as her morning extracurriculars require her to rise early.

It sounds like a lot. It can be, but honestly, I think it's manageable if you work at a typical speed--which Elena does not. I help by having Elena report everything due for the week (typically assigned on a Monday) and put it on two calendars--one for the month, and one for the week. Her math is hard for her, so she gets a lot of supervision/instruction from us. She does well with her LA and Science homework. She does not triage homework well (executive function alert!) and I can't help her unless she tells me all of her expected assignments--and several slip through the cracks. She has a homework notebook to write down assignments, and only uses it part of the time. Not every teacher posts assignments online, so I must rely on Elena to tell me what is due.

Personal responsibility is key here. Her teachers know of Elena's work pace, and understand that we are doing what we can 1) without trying to make her miserable and 2) giving her some fun time (not much in the evenings, I confess) and I have no problem asking for extra time. Elena occasionally self-sabotages evenings (meltdowns concerning homework, wasting time--executive function again), resulting in a miserable night for everyone here (hence the psych services, which is also helping with executive function).

Assistive Technology/School Help
In order to try to help E increase her efficiency, I've asked her AT team to give us some tools and teach both Elena and myself how to use them. Her online math modules were extremely frustrating for her, in part b/c the type is hard to read (especially with a visual processing issue) so they taught her a shortcut for a magnifier that doesn't impede the use of the program. I think that really helps (when she uses it). The other one that we are using right now is Snap and Read, which creates an outline and references while doing online work. E is starting to use it (she needs to be in the right browser, and of course her digital material uses different ones) and I think it will serve her well.

Elena uses homeroom time to work on homework or to finish classwork that required extra time. (All kids use homeroom time for stuff like this, or reading). I have her pulled 2x/week to work with her math teacher, and 1x/week to work with her LA teacher (E approves this). There is also available math tutoring on most Thursdays before school--Elena has taken advantage of this already.

Independence/Carrying/Peers
Elena is very small for a middle schooler. She can carry her backpack, but in the morning, the pack is at its heaviest; water bottle (for chorus; only part-full), lunch, notebooks; her school computer is only carried in the beginning of the day (it's left at school; we have one for home use, one for school use). She wants to carry her things, b/c that's what other students do. She wants to be independent. BUT when the pack is heavy (and since she's only ~60 lbs, it's heavy for her) it saps her energy as the day continues (as does spasticity). Maintaining energy is a constant struggle--I can tell after a long day, with a heavy backpack, and a strenuous gym class--she looks terrible when I pick her up at the end of the day. (I drive her to and from school to save us about an hour a day of travel time). To save her energy, I ask her aide to carry her backpack--or sometimes, a student (getting to early morning chorus). I know E would rather do it on her own; she knows when she is out of energy, and sometimes it's a bad scene (bad crouch, falls). I don't know how to give her the independence she craves without making everything "ultralite" in her backpack--which will lose ruggedness, cost more, and be unsupported technologically by the school district. And that's just the backpack; carrying other future things (cell phone, keys, money, sunglasses, etc.) that should be accessible is another story. We've been working on Pockets for a while. That's for another post.
Elena and I have talked a lot about independence and school, and in general, she is ultimately in charge with the expectation of being safe and as capable as possible. This translates as help carrying in the morning/when backpack is heavy, and Elena carrying when it is light/end of the day. If she insists on doing it herself, everyone is to let her; the school team understands that ultimately it is E's decision.

Any advice out there, blogland? I'd love time management tips, carrying ideas (that's the next post!), ideas for streamlining homework, etc. If I could keep time in a bottle I'd be a bajillionaire!

Wednesday, October 4, 2017

Time has flown by again. So here's the recap (I have a lot to write about since school started!).

Solar Eclipse
We all enjoyed the solar eclipse from our front porch. The kids had friends over, and they kept darting in and out, watching through our shields/solar glasses. My family loves astronomy, so this was a special treat!

Eclipsin'

First day of school!

Vivian: 3rd Grade

Elena: 7th Grade

The beginning of school is always a rough transition...the girls felt like they were ready for school (they were) but not ready for the summer to end (we were pretty busy, in the best way--but maybe not enough lazy time?). More on that later.

Kayaking
We were lucky to spend a spur-of-the-moment kayaking day with our friends the N family! I snagged a spot for myself and the girls (Jason was out of town) on tandem kayaks (Viv went with TN). It was PERFECT. The weather was great, the kayak outfitters were so kind and helpful, there was transportation to/from the boat launch, and everyone had their fair share of paddling, swimming, wildlife watching, ropeswinging, getting stuck on rocks, and riding "rapids". Seriously it was perfect. We cannot wait to go again (the kids are begging to kayak again)--but there hasn't been enough rain.

Viv swam to our boat for a picture

Sherando Lake
The following day we joined our friends the S-R family during their annual camping weekend. It rained most of that weekend, so we declined camping (hence the kayaking) but managed to spend the nicest day of the weekend out there. The girls were excited to play with friends, especially in the (COLD) lake.

Makeshift rowboat is much harder than paddling a kayak

We also met a very nice gentleman, Bill, volunteering at the campgrounds, who helped our girls fish.
After everyone caught a fish, we finally headed home.

Clyde
As we were getting in the van on our way to school, I found this little guy in the grass right before the lawn mowers came through! We named him (her?) Clyde.

Box Turtle hatchling!

We've never seen a box turtle so tiny! We released him close to where we found him--but without the threat of giant cutting machines. Good luck buddy!

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.